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Much as I hate the unpredictable pain of my condition, the worst for me by far is what is called 'brain fog'.
I have fibro and chronic fatigue syndrome. I was also recently diagnosed as having a hypermobility disorder. Turns out more and more evidence is being found that supports the actual physical changes and effects of the disorders. Legislation is now being processed to make it so that people with CFS cannot donate blood. The ban is already in effect in the UK. This is because there seems to be a definate link between the XMRV retrovirus and CFS (I know I have the retrovirus).
A recent study also showed that people with fibro and CFS lose 3x as much gray matter of their brain per year than healthy people, which prob explains a lot about the 'brain fog'.
I used to be intelligent. Now I feel overwhelmingly stupid at times. I will speak and be unable to pronounce a word without stopping for a moment and then saying it with great effort (did it with the word 'supervision' today). I will speak and 'say' one word but a completely different word will emerge from my mouth. I will literally forget what I'm talking about in mid-sentance. Some days I have no short-term memory whatsoever. I do not hear and process speech...I can hear you talking, see your mouth moving, but ninety percent of what you say is forgotten the instant it is said, even while I'm TRYING to retain it.
I forget how to do math. I was sitting at a restaurant trying to add some simple number on the receipt (like, adding 4 to 20 or something) and spent five minutes staring at it before I had to ask my room-mate to help me as I'd forgotten how to add. Yesterday the brain fog was so bad, I spent my entire morning literally feeling like I was dreaming. I couldn't focus on anything. Words made no sense, written or spoken, and I felt like I was speaking a foreign language any time I tried to speak.
Imagine you are exhausted. Now, imagine you are sitting on your couch relaxing and you let your eyes go unfocused and your mind wander until your thoughts are a dull hum. Now imagine that never going away.
My doctor assures me I'm cognitively fine. Familiar tasks remain familiar and easy to do. Some days, however, processing any new information whatsoever seems to be a monumental chore. I know people are starting to react to me as if I was some Forrest Gump who needs to be patronized like a child because I'm 'not that bright' and it irritates the hell out of me. My same intelligent mind is still there ranting away, I just have a disconnect trying to get thoughts from where they originate out of my mouth, or from the air into my head.
I hate the pain but I can take it. I hate the limiting nature of being able to stand, walk, or excercise only a tiny amount at a time. I hate doctors looking at me like I'm a drug addict (I am on NO narcotic medication currently and haven't been on any regular basis...ever). But I can handle all that. I'd take it all times ten if I had to. I'd be in a wheelchair on disability if I had to, over this brain fog.
I have fibro and chronic fatigue syndrome. I was also recently diagnosed as having a hypermobility disorder. Turns out more and more evidence is being found that supports the actual physical changes and effects of the disorders. Legislation is now being processed to make it so that people with CFS cannot donate blood. The ban is already in effect in the UK. This is because there seems to be a definate link between the XMRV retrovirus and CFS (I know I have the retrovirus).
A recent study also showed that people with fibro and CFS lose 3x as much gray matter of their brain per year than healthy people, which prob explains a lot about the 'brain fog'.
I used to be intelligent. Now I feel overwhelmingly stupid at times. I will speak and be unable to pronounce a word without stopping for a moment and then saying it with great effort (did it with the word 'supervision' today). I will speak and 'say' one word but a completely different word will emerge from my mouth. I will literally forget what I'm talking about in mid-sentance. Some days I have no short-term memory whatsoever. I do not hear and process speech...I can hear you talking, see your mouth moving, but ninety percent of what you say is forgotten the instant it is said, even while I'm TRYING to retain it.
I forget how to do math. I was sitting at a restaurant trying to add some simple number on the receipt (like, adding 4 to 20 or something) and spent five minutes staring at it before I had to ask my room-mate to help me as I'd forgotten how to add. Yesterday the brain fog was so bad, I spent my entire morning literally feeling like I was dreaming. I couldn't focus on anything. Words made no sense, written or spoken, and I felt like I was speaking a foreign language any time I tried to speak.
Imagine you are exhausted. Now, imagine you are sitting on your couch relaxing and you let your eyes go unfocused and your mind wander until your thoughts are a dull hum. Now imagine that never going away.
My doctor assures me I'm cognitively fine. Familiar tasks remain familiar and easy to do. Some days, however, processing any new information whatsoever seems to be a monumental chore. I know people are starting to react to me as if I was some Forrest Gump who needs to be patronized like a child because I'm 'not that bright' and it irritates the hell out of me. My same intelligent mind is still there ranting away, I just have a disconnect trying to get thoughts from where they originate out of my mouth, or from the air into my head.
I hate the pain but I can take it. I hate the limiting nature of being able to stand, walk, or excercise only a tiny amount at a time. I hate doctors looking at me like I'm a drug addict (I am on NO narcotic medication currently and haven't been on any regular basis...ever). But I can handle all that. I'd take it all times ten if I had to. I'd be in a wheelchair on disability if I had to, over this brain fog.
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